Frustrations

A slightly different tone of post for me but when it comes to Lymphoedema there can be moments of sheer frustration and a lot of the time things are not very straightforward – so I thought I’d do a wee bit on that. (I have used the fish tank photo on this post for a nice calming effect!).

For a start we still don’t know how or why Lucia has the condition, why she has good days and not so good days, why her swelling can fluctuate so much or even how her legs and feet really feel to her. I think that is one of the toughest things for me – not having a clue how it physically feels for her. However, over her four little years we have learned how to try and navigate these moments as best we can and give her the best care we can, including the moments when we meet medical professionals who don’t have much of a clue about the condition.

A few examples:

The first time was when a paediatrician sent us home when Lucia was only a few months old telling us it was ‘just’ Lymphoedema and no advice on what we should do because he didn’t know.

Then, at one of Lucia’s appointments for her vaccinations I had to tell the doctor not to do the injections in her legs and explained why. However, the doctor tried to insist that it would be absolutely fine – to which I disagreed and firmly stated that no needles would be put into my baby’s legs and that was that. She got them in her arms instead.

Lucia recently had her four year check-up where I was asked, ‘does Lucia STILL have…’. She found it difficult to say ‘Lymphoedema’ as she’d probably never come across it before, so I helped her out with the word and said yes, it is a life long condition and that we see a specialist every month.

Compression frustration

My current frustration though is compression garments. We have been working pretty constantly with Lucia’s therapist to try and get things sorted (I think we are her worst nightmare at the moment!) but we just haven’t got there yet. Someone commented on a previous blog post that it took them 15 years to get the right garments and the right fit and I am really hoping that won’t be the same for us!

Lucia is currently wearing garments that are about 9 months old and pretty much useless. They are full of holes that have been repaired so many times I have lost count and new holes are appearing almost everyday through wear and tear. Bearing in mind she usually gets new garments approximately every three to four months you can understand where we are.

The company that we have used up until now just haven’t been making suitable garments for us since January of this year. We aren’t sure exactly what the problem is but not one pair we have received since the start of the year has been wearable – with some even pushing the fluid down and making her swelling worse. We are now trying a couple of other companies and hoping something will meet her needs in terms of fit, comfort and style. And this needs to happen sooner rather than later as she desperately needs new garments and I want them sorted for her starting big school in September.

Swelling up, swelling down

We also need them sorted because her most affected foot, ankle and leg (her right) has been fluctuating quite a bit in terms of swelling lately. There will be days when her swelling goes up for no apparent reason and days when it goes down – but we have no idea why. It particularly affects her little foot which can feel so thick and heavy at times, her converse can be hard to get on and stay on and her little toes also hold so much fluid. Her ankle also gets very puffy and it can be difficult to try and get this fluid on the move again.

So our compression hunt is continuing and to add to this we are also now thinking of looking into toe caps as well – which quite frankly scare the life out of me. When we first started looking into compression I remember coming across a photo of a person wearing thick, ribbed compression complete with toe caps and I cried at the thought of my baby girl having to wear them. They also looked so uncomfortable and I can’t imagine Lucia even allowing us to put them on – and she can be one very stubborn girl.

But we have to think of the condition and how we can manage it to the best of our ability. And compression is such a vital component of that management so we need to just find what works for her.

So while we wait to discover some new compression we are occasionally using a type of punched kinesio tape on her foot and ankle, under her current garments which does work quite well – when she lets us put it on. She absolutely hates getting it off so we don’t get to use it as much as we would like (see the stubborn comment a few lines above!).

Keep on going!

I feel like I’ve been a bit waffly in this post but my main point is the frustration that comes with this condition in a variety of forms and how nothing is straight forward and easy. But, as always we will get to where we need to be and will keep going until we do.

Related

Comments

Hi Jo-Ann, thanks for sharing. I wish lymph management was easier. And it must be more difficult for little children and getting the fit right (not just the company issues, but the growing!). Do you know other parents of children with Lymphoedema? Toe caps are great if they fit well (poor little toes). Feeling your frustrations. Hope you get new garments ASAP. Xxxooo

Hi Clare, good to know toe caps are good, just can’t imagine her having them or wanting them on (or me wanting them on her if I’m honest but we’ll see). I am in touch with a few parents of children with Lymphoedema and they are a great support. Thanks for the empathy…always good to know we aren’t alone xxx

Oh dear so fustrating for you, must be so hard especially when she is so young. Does she wear the flat knit or circular knit stockings and do they have toes or open toe? Can offer some advice based on my experience 😊 x

Hi Julie, very frustrating!! She has always worn a circular knit and they are nice and fine in comparison to some others I have seen which are so thick and heavy. This is the first time since she started wearing compression that we have had to look elsewhere. She wears closed toe as well but her wee toes and the top half of her foot towards the toes need extra help at the mo to shift the fluid. All flat knits we have come across just don’t seem suitable for a 4 year old. Any advice greatly appreciated x

Yes the circular knit are so much thinner than the flat knit. I have worn the circular knit for about 10 years now but had some extra swelling which needed that extra support and I tried the flat knit. I sometimes wear thigh length or knee length depending on how my legs are, I found the thigh length really dig in the back of the knees on the flat knit but the knee high ones are so very comfy it’s just the appearance that puts me off them! But I have to say my leg measurements had never been so good when I have worn the flat knit they really do make a big difference to the swelling and also to my feet too. Just wondered if you could get them for kids and maybe you could use them on the days when the swelling is worse. They offer much better compression on the feet than the circular knit ones so would help with that too. The make I have is Mediven mondi And they do custom made ones and in black too which makes the appearance so much better! The best circular knit stockings I use are Sigvaris comfort and they are really lovely and comfy and I find good compression too. Great as I get the black ones and they just look like I am wearing knee high pop socks or tights. Hope this helps, am sure it’s all completely different for Lucia with how young she is but its worth you having a good idea for when she’s older what brands of stockings are really good. Also with her foot and ankle swelling could it be the time of year, the swelling in my feet and ankle is always so much worse when it’s warm xx

Thanks so much for all of this Julie. I’ll speak to her therapist and look into both these makes. The difficulty is the size though – it is a nightmare trying to get made-to-measure garments in such a small size. It just seems not many companies can do it, especially in the nicer sort of material. Lucia wears full tights as we don’t know what or where her problems lie and won’t for a few years until she is old enough for lymphoscintigraphy. Interesting to hear about the flat knit working so well…we have a pair of Juzo flat knit, really well made and fit well but she hates them and won’t let us put them on her because they are so much heavier than the circular knit. But this has all been really helpful. Thank you so much xx

No problem 😊 must be so hard with her being so young, you would think with made to measure though that they could do any size, crazy isn’t it and so unfair. Please give us all an update on how she’s doing and if you get any joy! Don’t blame her for not liking the flat knit bless her especially if she always has to wear tights. When I had my lymphoscintigram it showed in both my legs from toes to the tops of my thighs that the lymph nodes were not working properly but I mainly get problems with just one leg at the top the other can use the knee high. Just thought it’s good to let you know that even though it may show in both legs she may not always need to wear full length stockings. Also I have recently heard of an MRI scan than shows how the lymph nodes are working, should think it would have more detail too, just thinking if they do MRIs on children as this could be a better option for you to get her checked sooner. Anyways will leave it there or i will have you reading all night! 😄😄 take care xx

I know! I can’t understand that either – surely made to measure can make any size? And make them right? Don’t start me lol. We hope she won’t have to wear tights all the time but it’s the safest option for now until we find out what’s going on. Thanks for the MRI info too – very interesting. Thanks again so so much, you have been a great help xx

I am sure that you have gotten almost all the information you can to why the lymphoedema has good and bad days. But I hope to help you some and here are my experiences: Hot weather effects my leg-after a really hot day my leg feels like a peace of lumber.
To much salt in my diet (this I can feel already after an hour… my leg gets really heavy).
And I have to drink enough water during the day, something I felt was really strange when I was younger. I tried to drink less water instead so that the leg couldn’t hoard so much.. Since I didn’t wear any garments for two years the leg just expanded.

Do you have a trampoline? Trampoline bouncing is excellent for the lymph system and very fun for both your children:-)

When it comes to the ankle you can get a pad to put under the bandages on the ankle in the evening. (Maybe you already are doing this) This helps with the swelling, especially if the area is getting hard to touch.

Toe caps are hell. I hate them even today but since I am a grown up I use them sometimes for maybe 30 minutes on bad days. I can’t stand them..
But I didn’t use them when I was younger and my toes are fine today even do they really looked like potatoes after tough days–.

You can buy some small gauze and wrap it very very lightly around her toes when you are bandaging. This is magic and they should be slim again the next day:-)

You can also buy her some fun toesocks with lots of colors :). Even small pressures help.

Hi Tina, thanks for all this great info!! Really appreciate the time you have taken to write this. We haven’t tried Jobst as yet so I’ll look into them. The heat can at times make her swell a bit more but not always which I find strange. That’s interesting about the salt…I would never add any to her food but I must keep an eye next time she has a Mcdonalds! We really try to get her to drink lots of fluid during the day but it can be hard to make a 4 year old do that…but it is odd to think she needs to drink more to help keep the swelling in down. (Never straight forward!) She has a little indoor trampoline – we got it for her 2nd birthday (here is the post on it! http://littlemissluciaslymphoedemalife.com/?p=109) and both Lucia and her big brother love it!! We don’t do any evening wrapping yet but may be something we need to look into – all her compression is during the day. Her therapist has showed us how to bandage her toes and the benefits sound amazing but she hates it. Which is why I think she’ll hate the toe caps too – like you do. I’ll look up the various links you have sent and thanks so much again. Very kind of you x

Hi Jo ,
Just to let you know lacey is having the same problem with compression at the moment , isabelle is growing so fast that the knee highs are like three quarter length socks ! She has got toe caps too ask lacey how she gets on with these ! Good luck and hope you are all well Tula xx

Jo-Anne, we use Jobskin compression. It has worked wonderfully on Christian since he was around 2. It is thinner than the stuff they use on adults. We have had toe gloves made of it too. They have never been a problem and never caused discomfort. They also use it on burns parients. Now moving on to a thicker leg garment because christian is 7 and is rough on his stockings in the playground. He put a hole in his last one on day 2 of wearing.The toe glove will remain Jobskin though. How are you getting on with the physiotouch? Is ir still helping? We have haggled the suppliers down to AUS19K from the original 24. Sigh. Now just have to get hold of a machine to trial it.

Hi Jo, unfortunately it is Jobskin we are having the difficulties with and we are gutted as the garments have been brilliant for Lucia. Very thankful to have the physiotouch while we try and sort things out as it is still doing an amazing job. I still can’t get over the prices you are facing, nightmare. Hope you get a machine soon to see how good it is. Great though to hear about Christian is getting on so well (aside from the holes in his stockings but he is clearly just enjoying doing boy things!).

wow lots of responses to this blog, compression is always a big topic. I know you are having issues with Lucia’s fit for her garments but i have to say i am more than a wee bit jealous of the contact you have with her specialist and wish we had such a dedicated person. As you know Isla has been in open toe from her 2nd or 3rd pair of stockings closed toe was creating too many infections with the heat. I have no idea in the difference from flat to circular knit and as far as i am aware we were never provided with the option. I am still on the hunt for the tape you were given but so far no luck.
How are you getting on with school shoes, we need indoor and outdoor shoes and after trying a mass of different places we are back to the old faithful of Lellie Kellie for the soft plimsole and school shoe these are the only ones that will accommodate her swelling.
I look forward to seeing 1st day of school pics, Isla is so excited to be going back next week (woohoo). speak soon Heather

Aw Heather I am only seeing this now!! Yes, lots of wonderful people with great advice. Going to do an update this week on where we are now. We are extremely thankful for our specialist – she is just amazing and we’d be so lost without her. Not fair though that everyone doesn’t get the same service. As for school shoes, old faithful converse. She is in black ones for school as we’ve had no luck with anything else. We’ve also had multiple meetings with the school and got a care plan in place. Can you send me pix of Isla’s Lellie Kellies? For some reason they don’t seem to fit Lucia either. Talk soon x

subscribe to blog via email

connect with me online

a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More